Our colleague Finbarr Livesey sadly passed away on 2nd September 2019. Here we publish the introduction to his last published work - a fascinating working paper in which he provides an important argument for deploying the 100K genomes database in the public interest.
While there is much discussion on patient protections, confidentiality and other ethical issues surrounding the use of the large scale genomic database developed through the 100K Genomes project, there is currently little discussion on how the public sector might benefit financially from the use of the database by private sector actors. This is a significant omission as this publicly created and publicly controlled resource is different in scale and scope to other resources which cross the boundary between the private and the public sector as part of ‘traditional’ drug development. The database that has been created, and is owned and controlled by a company wholly owned by the public sector, has significant potential value and will continue to grow in value as further sequences are added, heading towards a new target of five million genomes over the coming five years.3
A new drug target, a molecule, these are single items that can be developed further by private actors, once identified in publicly funded research, and then if successful offered for sale to the healthcare system here in the UK and globally. This is a gross over-simplification of the ‘traditional’ development pathway but given how long it has been established it is hard to step back and consider that there is the possibility of a different narrative, a different approach for the public sector in negotiating with pharmaceutical companies and others in developing new treatments.
Use of the 100K Genomes database is fundamentally different in that the database is an aggregation of thousands of individuals genetic sequences linked to their health records which companies essentially rent access to, along with use of an analytical environment in order to generate understanding and therefore value. This distinction means that there is a significant difference in the interaction and a much stronger position for the public sector to negotiate the terms under which returns may or may not be shared. At this point in time just using established or traditional norms on how this relationship should operate would be a significant error and would miss an opportunity to generate large scale funds for reuse within the healthcare system.
This article discusses why this is a particular moment for the NHS and Genomics England (GE) as they structure the commercial relationships with companies accessing the 100K Genomes database. The use of the database may include the development of new targets for therapies and diagnostics, as well as possibly repurposing existing drugs from one disease area into another, among other uses. The article suggests possible channels through which financial benefit could flow back to the healthcare system and provides a first pass model for one of the channels to have a ranging shot on the potential scale of such financial benefits.
Finbarr Livesey, August 2019